Aprile 23, 2011 Chemo Kinda Sucks...

Well no big surprise there, right? I started the chemo on Sunday the 17th, so today is Day 12. The first 3 days were okay...no real problems...a little nausea, no big deal. Wednesday night, things started to go a bit downhill. I went to bed and my skin felt quite warm to the touch while I felt like I had chills (just like when you have a sunburn). Thursday was not a good day. I met with my PA and was doing okay. I spent the rest of the day on my feet and by the end of the day, my feet were on fire! I literally wanted to jam them in some ice. That was the hand/foot reaction they warned me about. I called the NexConnect support line (offered by the people who make the Nexavar poison, I mean chemo) and talked about the problems I was having. They told me to soak my feet in Epsom salts try this, try that and to be sure to call my doc to see about stopping for a few days until my symptoms eased. I did call the next day and they cut my dose in half. Since then, the symptoms have been manageable. I have tingling, pain and/or numbness in my extremities in varying degrees. If I stand for too long (still trying to figure out what too long is) my feet start to hurt, so I'm taking it easy for the most part. I noticed a couple of days ago that individual strands of my hair are falling out again. I'm told that I won't lose it all, but it will thin. Great. I wake up every morning with a stomach ache and nausea, but it usually disappears within a couple of hours. Despite all of this, my appetite has actually increased, although my digestive system isn't completely happy about that. Some fatigue kicked in on Day 8 or so, but not nearly as bad as I was pre-transplant. I have to tell you...it's really difficult to consciously put poison in your body every day, especially when you were feeling really great before you started taking it. I have to say, I'm a little disappointed that XYZ University hasn't followed up with me to see how I'm doing or to talk about trying to increase the dose again or anything like that for the last 7 days.

Oh, and I had an MRI a couple of weeks ago. Everything looked great, and my bloodwork looked great too. I'm thinking I'll be transferring back to Dr. Awesome Hepatologist by July when I'll need to do a lung scan and another MRI. So why do I think he's so awesome? Well many reasons, but here are a few: 1) He randomly sends me e-mails to see how I'm doing; 2) He quickly responds to my e-mails, especially when I have concerns, and he tells it like it is, which I appreciate very much; 3) His bedside manner is second to none; 4) One of my friends, a patient of his, says he routinely asks her how I'm doing. Now THAT'S a great doctor.

April 2, 2011 Current Status and Next Steps

On Thursday, I met with my PA and one of the surgeons. I also talked with my PA again on Friday. It turns out that I misunderstood the previous info about the cancer, due in part to my PA’s lack of knowledge in the area. There is something called the Milan Protocol that is used for transplantation guidance. From what I now (think I) understand, this guidance says that if you have more than two occurrences of cancer, you cannot be transplanted until you meet the guidelines. The guidelines are two occurrences of cancer or less and tumors that are 5 cm or less. In addition, the cancer must not have metastasized. The Protocol was developed to lessen the chances for recurrent cancer in the new organ or even other organs.

Three stains of “random” adenomas were sent to pathology. It was determined that all three stains had cancer. They sent an additional three samples to pathology, and these came back Friday morning. All three of these stains had cancer, as well. This confirms that I had multifocal hepatocellular carcinoma. Apparently, all of the adenomas had presented as adenomas in the MRIs, and there was not enough change in their appearance for a radiologist to have caught the changes. The largest adenoma was 10 cm (about 4.5 inches). So the sum and total of this information is that they absolutely would not have transplanted me because I was way outside the criteria of the Milan Protocol; they would have treated me for the cancer first and then transplanted me…IF and only if I was able to eventually meet the criteria. My PA would not come out and say it, but I was left with the impression that even with treatment, I would not have been able to meet the criteria of the Milan Protocol and I would not have been transplanted. I believe this means that I likely would have died.

This is why it is so important that I live and thrive. I need to show the transplant world that under certain circumstances, transplantation can indeed be a viable treatment option for others like me; others who have cancer that exceeds the Milan Protocol where the cancer is contained and encapsulated with no signs of vascular invasion.

I was told by the surgeon that XYZ did a pilot study with a low-dose, chemotherapy drug called Nexavar used to treat certain types of cancer. After one year, only a handful of patients who took the Nexavar (a pill) for a year had a reoccurrence of cancer; whereas 75% of patients who didn’t take Nexavar had a reoccurrence of cancer somewhere in the body. XYZ and 12 other transplant centers are now doing a larger study. In the interim, I am of course going to be put on Nexavar for a year. I am told that the side effects are usually minimal, but some of the more common ones are fatigue (great), hair loss (fabulous) and hand and foot disease (peeling of the fingers and toes…no comment). It’s only for a year, so I’ll of course suck it up.

My PA and I still both feel very optimistic since the cancer was contained, and again, there was no evidence of vascular invasion (meaning that there is no evidence that the cancer had a chance to escape and spread). My USU hepatologist feels similarly. I have to go back to XYZ next week to go through a learning process with the Nexavar. The following Thursday, I have to have my quarterly abdominal MRI, followed by a lung scan in June.

My PA took me off of my blood pressure medication (Nefedipine) to see if that helps the edema I’ve been battling for the past month. I will stay off the meds if my pressure stays below 140; otherwise, I have to take Metropolol, a beta blocker. My 90 day mark happens on April 5, which means I get to drop several of the drugs I’m taking, which is great.

I don’t think I have to tell you all that I am SO OVER the drama. Hopefully I won’t have anything new to report other than how well I’m doing on the Nexavar. As always, thank you for all the love, support and prayers.

March 17, 2011 - Overdue Update Complete with New Drama!

First and foremost, I'm doing pretty well. I've gained about 8-9 lbs and look healthy. I'll get a pic up on one of the sites one of these days. I feel pretty well, too, although I'm having a hard time kicking a urinary tract infection. (They warned me that it would take me longer to kick things than a regular person. I guess that makes me irregular. ) :) Yeah, I know. Big news flash.

Now, on to the drama, which takes breaks but never seems to go away. I was grateful that John was with me today because we got some news that was good/bad/lucky/? at the same time. We received some pathology reports that showed there was cancer (stage 1) in three of the adenomas. This is the BAD news. I was told that their protocol is not to transplant someone who has more than 2 areas with cancer, so that makes me extremely LUCKY. That is not to say they wouldn't have moved forward with the transplant; rather, they would have tried to treat me for the cancer before transplanting me. The GOOD news is that the cancer has not metastasized (meaning, that it has not spread) to other organs. They are now going to have a doctor powwow consisting of radiologists, oncologists, and surgeons to determine whether I need to do some form of chemotherapy. This is the "?" part. They are looking into whether the cancerous samples came from the large (5cm>) adenomas or not. If so, they will likely put me on chemo; if one or more came from a small one, they might. My Xmas wish list might have to be a wig this year. I'm already losing hair from my anti-rejection drugs.

So the other outcome from this is that I'm now, once again, a medical guinea pig. Because they would not have normally transplanted me, they are now quite interested in watching my case. So the other GOOD news is that if all ultimately goes well (and there's no reason to think that it won't) I could actually be the case that paves the way for others who are similarly situated who wouldn't have been considered for transplant prior to cancer treatment. I'm really jazzed about that part. I would love to think that all of this could benefit others and that they could avoid unnecessary treatments.

The other BAD news (which isn't really all THAT bad) is that I will now have to have abdominal MRIs every 3 months and lung scans every 6 months. I HATE the MRIs because:

1. They take around 45 minutes.
2. Your arms are pinned to your sides in a "cage."
3. You are asked to lie still and hold your breath for anywhere from 10-30 seconds over and over again, so it's not like you can just lie there listening to the music trying to tune it all out.

Oh well...you gotta do what you've gotta do, right?

So anyway, that's what's going on. I didn't mean to make this so long, but I wanted to convey all the relevant info. I'll keep you posted, but for now, I'm not scheduled to go back 'til March 31.

January 5, 2011 One Liver to Live - The Transplant

My transplant happened on January 5, 2011. The details are posted here:  http://www.caringbridge.org/visit/kspitzer/journal/index/0/0/asc.  Go to journal entries, put them in reverse chronological orders, and then read.  Gory pictures can be found by clicking "Gallery."